How can people be so cruel

[gracesofia]

People who you think are your friends suddenly become unavailable. I am at work and have totally blanked and i mean she turned her back on me. All i need at the moment is just a hug nothing else. Another so called friend asked me if i was ignoring her after she saw me in floods of tears. No are you ok no hugs nothing. I feel so alone so upset i was only diagnosed last week so the shock is still hitting me x

[Lisacj]

dear gracesofia, Life totally su## when friends dont show care and love. I know exactly how you feel, have been ranting along the same lines for a few days.I get the feeling some of my friends are saying "now whats wrong" great mates hey!! Even had my husband tells me how hard I am to live with? Silly young girl from work came up to me today and asked for a tissue, I said I didnt have any, she said Oh thought you would as you are always sick!!! Havent told any one at work for fear of loosing my job, so guess I look like hell most of the time.This seems to be a constant sadness with so many of us on here,that may make you feel less alone and not to take it personally, may help a little, but not a lot!!. I am sending cuddles, and truly know how you feel. Remeber it is their loss, goes to show just how shallow people can be.x

[Magnolia]

They might be afraid of saying the wrong thing, and up setting you more. They probabaly don't know what this means for you. Not many people know about PBC or the consequences of the disease. I've had it for 20 yrs, and just now having symptoms. I was quite upset in the beginning also, and had a dr. who wanted me to go to a clinic for evaluation for a transplant, then, for on down the road.

I was diagnosed in 2003 finally after years of having too high LFT's. This made me feel like it was getting close to the end for me, when in reality it wasn't. I still don't have an enlarged liver or scarring as of last year's scan. You need someone to talk to! Is there a family member you can rely on? You need to know this might NOT even change your life for years, and most of all, in most cases not take your life!

[WendyMarie]

Since i told a friend of my diagnosis, I noticed they are not the same towards me. They are not their usual, light hearted, joking selves. It's like a one sided conversation, no matter what subject we are talking about, weather, work, news, etc. My own brother, said to me, "Well, at least you can say you've lived a full life." WHAT????? I still cannot believe he said this to me.

[gizocsi in reply to WendyMarie]

.That was exactly what my son has told me. My sister told me I'm cheating with my memory loss, because I remember some stories of our childhood. Sometimes people don't care with their words. We all can hardly find the good words, according to other's problems. And outsiders cann't understand our fears. When I told my girlfriend about my PBC and feelings about it, next they she sent me a short email: I checked PBC on internet, it's not a big deal. We need to find our inner, hidden strength, and experiment with new kind of joys. I began to go to a tai chi group, (very bad back pain) and find good exercises on internet. I think such kind of activity, as also yoga is surely helpful, psychologicly too. Also it's funny to see my bad painful body can learn new movements, and I like too the company, they laugh so much. It can ballance a little the lack of empathy from closest friends and family. You should remember, it's not Your fault if others lack empathy. Cheer up!

[WendyMarie in reply to gizocsi]

Hey....my brother also said that too. Told me he looked PBC up on the internet & it didn't look like a big deal. He said, "Heck, I have a lot of those symptons all the time....fatigue, itching, joint pains...etc. I thought, "What a moron!."

[Magnolia]

Wendy, I don't think you're brother gave a lot of thought in saying that! During my last biopsy, I was sitting in a room with two techs who seemed to be just taking thier time about the procedure, I thought I'd strike up a conversation. I asked one of the techs " Do you like you job, here working people, doing this"? He said yes, but usually, by time they get this far, it's bad!

I got the results of my vertigo test today and I don't have an inner ear problem. So now I'll be seeing a neurologist. Now it's going to be a long event, trying to figure out my symptoms.

Magnolia

[Magnolia in reply to Magnolia]

And on the same note, my husband hasn't even asked what my dr. told me today about me having vertigo!

[Lisacj in reply to Magnolia]

he sounds just like mine.?? Someone on this site did remind me,if it is not a visual ailment,big and bloody, they dont see,or remember. I think they will always be little boys, and they come first.. oh well they are ours and we are stuck with em??? Not sure that cheered you up,ooopps. Just my observation.My intentions are meant to be kind.

[Magnolia in reply to Lisacj]

I know, he provides well for me and takes good care of me. It's taken me yrs to make him understand that my PBC is autoimmune. In the beginning I found out he was telling everyone I had liver damage from taking meds!

Of course I was on meds, I have degenative disk disease, Fibro, tendonitis. osteoporosis, PBC, arthritis, GERD and now the vertigo thing.Of course you can't see these things, and to him, I'm okay.

[WendyMarie in reply to Magnolia]

Wow....it's amazing, isn't it? The techs at the biopsy place & your husband not asking about the vertigo. My husband has not looked up PBC or read anything about it. I told him I knew he had not read anything, & all he knows about PBC is whatever I happen to mention. He said, yea, I just figured you will tell me what I need to know. If this were happening to him, I would be researching everyday!

[Magnolia in reply to WendyMarie]

Wendy, I finally told him yesterday, and that it meant I would yet have to see another Dr. My husband has never read a word about it, but I have a brother who has and a neice who helped me gather info in the begining.

I had gone alone to find out the results of the biospy, and she showed up at the Dr's office. My mind was reeling, and was glad to have some one to talk to after, what the Dr. had said.

The vertigo thing has turned into dizziness now with my ears still ringing. My BP is going up and down, and I can't figure it out.

[WendyMarie in reply to Magnolia]

I don't claim to be a doctor, but the ears ringing, BP fluctuating, & the dizziness, sounds like something unrelated to the liver. Who are you seeing about this, an internist?

[Magnolia in reply to WendyMarie]

I'm suppose to see a Neurologist next. But I wonder if it should be a heart specialist. I've saw both already, more than a year ago, because of low blood pressure in the mornings.

Yesterday in the morning my BP was 74/58 and pulse 136. By night it was 149/75 and pulse 70. It could be anxiety, but I don't know. If any of you have had any experience with this, let me know, please. I don't think it's liver related either, it all started with the vertigo episode.

Magnolia

[Axl888]

I lost my closest friend when I was diagnosed with PBC, she couldn't cope with the thought of me being needy I think was the problem. I can understand that. I have a friend who is disabled through being overweight and other medical problems. She lives in a flat on her own and can't do much for herself. If I let her, she would have me running around after her all the time, shopping taking her to doctors, hospital etc. She asked me to paint her bathroom and when I agreed, she has since turned that into doing the kitchen and the lounge too!!!!! I work full time and have two sons. I don't want to take on the extra responsibility. Does that make me a bad friend? I dont think so. After losing one friend, I make sure the friends I see on a day to day basis are never put in the awkward position of having to listen to me moaning and whinging about PBC. I have a network of friends who have PBC who I use for that purpose. They have it, they get it and they understand. We are there for each other. I also try to have a positive mental attitude towards PBC. I know I am one of the fortunate ones whose symptons are relatively mild, but I do get tired and I get brain fog and have had to make changes. I have had a rough road with my husband, but he now knows when I say I can't do something, I really cant do something. I don't take advantage and I try not to get into a situation where I am going to get hurt. I want to keep my regular friends and I don't want to be a burden to them so I look for a different outlet if I need to. That's the way I cope and that's what works for me. Hopefully you will find a way that works for you too.

[Axl888]

ps, I understand how you feel, I can remember feeling the same when I was first diagnosed, it is a shock and I totally understand how you are feeling. Have you contacted the foundation to ask about a local support area to you. When I was first diagnosed, I was sent a list of people in my area with PBC who were available to contact. Sometimes it can help to meet up with others. Sending you a big hug

[Hidden]

I had the same, I lost all my friends even my best friend and now i have no one only online friends. I put it down to that I thought that they thought I was some drunk who had done this to my self, they just didn't want to know me anymore, My first diagnosis was Lymphoma and they were all over me then bringing me things like rice puddings and egg custards but as soon as I told them about the PBC they all scarpered and not one of them have been in touch. There is also the fact that I used to do a lot for friends ( sewing wise on their clothes )and now I don't so they don't want to know as i am no longer useful to them.

Even my husband noticed, one day when i was being nasty to him because i was peed off he said to me, have you noticed that que of friends at the front door? well I am the only one in it so stop picking on me.

[Hidden]

I've yet to tell my friends that I have PBC as I've not done so as they'd not know at all during the waking hours, it is at night-time they would due to the itch.

A couple of close friends do know and tho' I don't see one as often as I'd like due to us not living so near each other, we are in contact regularly and have known each other 20+ years now. When we did spend time together for the first time after I got the diagnose, she asked me a few questions but didn't treat me like I was an invalid or anything. She had taken a bit of time to find out what PBC is and tho' she hadn't looked anything up herself as she works as a GP receptionist, she did ask one of the GPs at her surgery who explained as they have just 2 patients with PBC on their books apparently.

I have a lot of retired lady friends that I have made over the years due to voluntary work and the fact I lost my mother when I was only 22 (I am 48 at present) so that is probably one reason I get along so well. I know these particular ladies would probably try to molly-coddle me and that is definitely not me (always been a pick-myself-up-and-soldier-on type of person, moreso as not long after my mother died my first husband left me a widow with 2 young children) so I find it easier to just get on and not say anything.

But I can well understand how some people can stigmatize some as when I was widowed back in 1993 I found I lost a lot of friends but I think that was due to the fact a lot just do not know what to say. I have no problem with a person who is bereaved but that is probably due to the fact I've had quite a bit of it in my young adult life whereas for some, it can pose a problem.

Linda, I've been in your husband's position years ago with my first husband. He was sick for a few years prior to his death but he managed to soldier on, keep up working despite but at times it did get tiring for me especially with 2 young children to care for also. It's not intentional, it is frustrating I can tell you especially if one can't do much to help at all. My 2nd husband is now in the same shoes that I wore all those years ago, he gets frustrated that he can't do anything at all throughout the night if I am awake and itching and he has a full-time job to contend with. I gave my husband the ultimatum when I was given the PBC diagnose in Dec 2010, I said due to us only having been married 18mths when I was informed PBC even though the itch started before we had been married a yr., he could walk away from it if he wanted. He was adamant that he was not going anywhere so slowly we tried to change our lifestyle and decided that in a way it would prob give us more quality time than had I not had it as it is a fact a lot of people who are perfectly healthy can waste a lot of time on doing things that one day they find it's too late as the time has gone. Hope you get over your friends who deserted you, after all what are supposed to be friends if they aren't there when the going gets tough?

[Hidden in reply to Hidden]

I don't regard them as friends anymore but as users, I was always there for them but now the tables are turned....well they have shown their true colours. I can live without them. One friend even used me moneywise, will I ever learn!!

[bwswave]

I had similar experiences like yours too, I have both BPC/AIH, for 11 years now, and some people were so unkind, one even said, to me, you need a good drink, that'll do you good, and I have never drunk alcohol, probably that's why she said it, because people thought it was strange that I don't touch alcohol. Then being so ignorant, at a later time she said, you can always have a liver transplant. I was glad when I retired from my job, with all the ignorant remarks I had to put up with, I do feel for you, but, try to put all of that behind you, and think positive, you will find friends that understand, and be there for you, I eventually did. With all my best wishes to you graceofia, and everyone here. xxx

[WendyMarie in reply to bwswave]

Yes, I can relate to that. My own mother said the same thing. "Well, you can always have a liver transplant. I have known people that had one & got along quite well." She acted like it was no big deal. I wasn't even thinking that it would ever get to that stage!

[bwswave in reply to WendyMarie]

I'm sure that a lot of people don't get to that stage, I was 52 when it all started, and because of the AIH along with the PBC, it took about 3years before things started to get better, a liver transplant is a big operation, and not everyone is lucky enough to receive one, when needed. I do hope that we dont ever get to that stage.

I wish you well WendyMarie. xx

[gracesofia]

Thany you all so much I really appreciate your replies. It is helping make each day a little easier. Xxx

[mumofthree]

Unfortunately you will come up against this, but be strong, some people can't cope with other peoples illnesses...Its as if they are afraid that you'll become too dependant upon them which cannot be further from the truth. If like me you just needed to have someone to talk too, at first just to explain how you are feeling and your fears and once thats out of the way, just to be asked ocassionally if you are ok is enough. No one wants to wallow and moan all the time, but being ignored makes you think no one cares.

But chin up, be strong, we are all here for you.

[youngatheart]

I have been truly lucky as all my friends are OK with this. Work has been understanding asking that if it gets too much just let them know and will sort something out. Considering I am nearing retirement age very considerate of them. As for my sister I don't see anything of her but this has nothing to do with my illness we just don't get along. My daughters never mention it after the initial discussion reckoning i will still be nagging well into my nineties. As for your experience I think that people shy away from the fact this is an illnesses that has no cure and time factor. They just don't know how to hanlde it.